Sometimes life doesn't go according to plan. Sometimes you find yourself on a road you never imagined you'd travel. Sometimes it can scare the pants off you. This is the story of how our little family came to be, continues to grow and how we (attempt to) manage the chaos.

Tuesday, November 30, 2010

It's been a crazy week and it's only Tuesday! Yesterday, M had her casting and she did so awesome! The guy doing it was really surprised how well she cooperated and tolerated it. The whole process only took 1/2 hour. It took three times longer for us to get there! Anyway, her AFOs should be ready in about three weeks. We (okay, I) chose a super-cute flower design for the overlay. We were able to get a tiny bit of Christmas shopping done afterward as well.

To﻿day, I finally dragged myself to the doctor to address my chronic headaches, nausea, and recent dizziness. The doc discovered quite quickly that I have a pretty significant sinus infection. This is the second time I've turned up with a sinus infection with no preceding illness. She also looked back at the CT I had last year during that whole pseudotumor episode and shared with me that my sinus structure is looking pretty crappy and the radiologist remarked that I had "moderate sinus disease". That would've been nice to know LAST YEAR! In any case, if things don't clear with the antibiotics, I will most likely find myself visiting with an ENT.

After my appt, we headed down to radiology for M's repeat renal ultrasound. Her pedi called this evening with the report. Kidneys still look fine, but no one knows what to make of her very full bladder. She is obviously not emptying properly and while it's not a problem now, it could quickly become one. She is putting a call in to the Peds urology team to get their recommendation. We're hoping that if there are procedures to be done, they can be done in conjunction with her surgery on the 15th.

This afternoon, E was able to be seen by neuropsych. She had a cancellation and we snagged it. It was an emotionally draining hour and a half. It was also very informative. I left feeling armed with a knowledge and power I need to try and help him. Basically, on multiple levels, he fits the criteria for an autism diagnosis. However, because he doesn't fit the mold completely, he escapes the label. This is good. His sensory issues are definitely worse. His social skills have regressed. He is easily overwhelmed by his surroundings. His cognitive ability is a both a blessing and a curse. He is learning at such an amazing rate, things are so much more overwhelming to him. She is concerned mostly with his CNS development (or lack there of). It's impossible to know if his lack of development and control is a result of prenatal factors, premature birth, toxin exposure, lack of sensory stimuli, or physical/emotional injury/trauma. He needs therapies. He needs occupational therapy, a speech/language pathologist, social skills training and possibly behavioral therapy. I left the appointment, called the school district and set the wheels in motion for an IEP to be developed. Armed with an extensive report from his neurologist and neuropsychologist, it wasn't a problem to get it going. We have a long way to go, but we're committed to helping our little monkey be the best he possibly can be.

We got our tree up and decorated, the house decorated and it's beginning to look like Christmas around here. We had some flurries today and Rudolph was on TV tonight - does it get any better?

Friday, November 26, 2010

I am so pumped about Shutterfly's Christmas Card Promo! Since hearing about it and checking it out a few days ago, I've been addicted to surfing Shutterfly to try and decide which of their fabulous Photo Christmas Cards we're going to order this year. I have a few favorites, but I can't tell you which - then it wouldn't be a surprise when you find it in your mailbox. I was also stunned to find they have so many other awesome products to choose from. The Photo Calendars are an incredible gift idea. After all, who doesn't need a 2011 calendar? With E's recent calendar obsession, I think I may make one for him with pictures from each corresponding month this year. I know he'd get a huge kick out of seeing himself starring in his very own calendar. The Photo Coffee Mugs are great, too. Perhaps Daddy needs one of these......shhh.....don't tell him! Anyway, I strongly encourage you to go to Shutterfly.com and check everything out. I know I've found a new favorite photo product site!

Tuesday, November 23, 2010

Our appointment yesterday was, as I expected, just wonderful! It's amazing what happens in six months, though. The elder neurosurgeon retired and moved to Kenya with his wife (who was also an NP there). He never performed any of M's procedures, but I do recall (vividly) my first encounter with him last December. We came in and had an emergent procedure done by some super hot highly qualified adult neurosurgeon because our beloved Dr. I was out of the country - I know, how dare he. Anyway, the peds nsg checked in us the next day. He opened with: "I see you adopted her from Louisiana. What'd you do that for? Couldn't you find any healthy, white kids around here to adopt?" Oh, yes he did!! Turns out he has a pretty twisted, and very dry sense of humor. We got talking about how he takes mission trips to Kenya to do hydro surgeries and when he retired he and his wife would move there. I still never got any warm, fuzzy feelings about him, but I digress - he and his wife have left. So, there is a new nsg. Our favorite NP, J, has also left. She was like my best friend during our 10 week stay earlier this year. She did most of M's shunt taps, checked in us almost every day and occasionally just stopped by for a sweet, M snuggle. I really loved her and am going to miss her dearly. So, there are two new NPs. There is also, of course, a new resident whom I met yesterday. I wasn't particularly crazy about the last one - he'd be the one that ignored all of the signs that she was bleeding during her hemorrhage in February until I got there, found Dr. I and told him that she was white and neurologically bizarre. This one appears to have just graduated - from middle school, that is. They come and go pretty fast and so far, no one has measured up to our very first resident - he was great! I am happy to report that the person that was there doing a fellowship for our last two months in the hospital is gone. He was a prick - cocky, rough, sloppy. I couldn't stand the sight of him and from what I gathered yesterday, no one else could either.

Overall, Dr. I was pretty happy with M's status. He's a man of few words, but his expressions tell the story. He gave us another six month pass. Barring any "issues" she'll have an MRI and another visit next May. I completely forgot that he would have no idea about her IS diagnoses since she was diagnosed just after our last visit with him. She started having clusters of spasms just after her post-op hemorrhage in February and ALL THREE neurologists that followed her in the hospital repeatedly blew us off. They thought it was muscular, med-related, or just "healing". Therefore, it took three months to get an IS diagnoses. That's three months of unnecessary damage. At hundreds of spasms a day, that's a lot of damage to add to an already very damaged brain. Anyway, when I told him, he was so sad and so disappointed. He knows that her outcome could've been completely different had it been treated right away.

In spite of everything, I think although developmentally she's not where he was hoping to see her, he was thrilled to see her smiling, squealing, laughing and being silly. We're pretty happy, too!

Sunday, November 21, 2010

Nothing really new to discuss, but I have some updates all the way around.

E scored an appointment with his neuropsychologist for Dec 13. We're on the short list if they have a cancellation earlier. The nurse that called me back said the doctor was anticipating this visit - whatever that means. I guess it probably means he's following a typical course and this is around the age kids have difficulties? In any case, I'm grateful we get to see her so soon. Incidentally, the last two days have been pretty good. Other than the typical "boy stuff," he's been fairly happy and peaceful.

Kevin scored a deer this morning, roughly 16 minutes after getting out in the woods! YAY for my mighty hunter putting food in the bellies of his family!

M gets to see her (and my) most favoritest doctor in the entire world tomorrow! We have gone SIX WHOLE MONTHS without a visit to neurosurgery - a record! While it may sound twisted, I'm so excited to go tomorrow. There is a peace and a happiness I feel when we see that doctor - strange since he's cut into my little girl's head 14 times. Truth is, we LOVE him - truly. We've been through hell and back with M's neurosurgical status and he's seen us through it all. He's fought just as hard as she has and never once even considered giving up on her. He has always been there for us - anytime day or night, in person, on the phone. He has never acted like we were a bother. If we ask for him, he is there. I can't wait for him to M and all that she has accomplished in the last six months. Prior to her appointment, she'll have an ECHO to check the status of her distal shunt catheter. I am praying it is still happy and comfy where it sits and we don't have to replace it. Although, I'd be slightly surprised at that considering how much she's grown!

Christmas is coming - in case you didn't realize. I feel like I'm pretty far ahead at the moment. There's a nice big, green tote downstairs full of presents - clearly marked (and booby-trapped, of course) for all to KEEP OUT of. My sweet, lovely babies were wide awake at 4:45 this morning, so rather than fight the sleep monster, we got up, showered, ate and headed off shopping. E is so anxious to get the Christmas decorations up. I've promised him we can do it next Sunday when Daddy gets home from hunting. I've started a baking list, but it's a bit to early to tackle it yet.

I guess that's about it for today. I'll try to report on the big appointment tomorrow afternoon.

Friday, November 19, 2010

In parenting, specifically parenting children that come with uncertain history and, for lack of a better word, "baggage", we all like to try and make it appear that we've got it all together. I know I try - not only to appear that way, but really keep it all together. E has provided us with challenges ever since he giggled his way into our hearts on April 24th, 2007. He had some obvious, albeit minor medical problems. As the months went on, it became clear that he had some not so obvious emotional and neurologic problems. The years have passed and we have worked diligently at responding to his needs and giving him the space, the resources, and encouragement he needs to thrive - even if that means he doesn't follow any sort of predictable (aka "normal") course. He has done well overall, has made tremendous progress and overcome many obstacles.

Early this Spring he underwent extensive neuropsychological evaluations at the recommendation of his neurologist. To back up a bit, his neurologist is certain that he has neuro damage, the extent of which or the etiology of, we are uncertain. It has been her feeling that putting him through an MRI, EEG, etc., wouldn't change our course, so why subject him to it. Anyway, the neuropsych eval revealed that he definitely has Sensory Processing Disorder and most probably ADHD. She gave us recommendations and we have followed them. He's continued to grow leaps and bound in cognitive development, but lately, has begun to regress emotionally/socially. It's difficult when you have to try to explain these types of "hidden" problems to people who don't live it. People are quick to write behavioral issues off to a child being unmanageable, a product of bad parenting, or "just being 4 1/2." With a child like M, you can rattle off the laundry list of medical diagnoses that explain her problems. They are tangible and people accept them even if they don't understand them. E's issues go much deeper, are more complicated, and are very obviously tied to his SPD. Lately he has had very adverse reactions to things that six months ago didn't bother him. He can't stand to have his nails trimmed, his ears cleaned, his teeth brushed. He picks at his food and won't eat anything that has "spots" on it, is a certain color, or is of an undesirable texture. He is having strong reactions to sounds and odors. He is afraid of the dark, afraid of the house falling down, afraid of storms, afraid that everyone's going to leave him. He panics if there is a mark on his skin, a scratch, bruise, paint/marker. No one should have to live with that much fear - especially not an innocent child. Initially, I tried to write it off as a phase or as him just testing his limits. Now I see that, selfishly, I was probably trying to avoid admitting that he very possibly is regressing or having new issues.

Yesterday, I took him for a haircut. For about the last year, he has done great! It's not his favorite activity by any stretch, but he has tolerated it. He sits, gets his hair cut, plays with the water bottle and leaves with a sucker and a smile on his face. Yesterday, he went into a full-blown panic almost immediately after the girl started. He was screaming, swinging, trembling - saying it hurt. It took me back to his first 2 years of haircuts when it was a 4-man job. I guess that was my slap in the face wake up call. I have requested an emergent appointment with his neuropsych (which will, unfortunately, probably land us an appointment in Feb).

It infuriates me to no end that something most likely happened during his first year of life that caused damage to his brain and caused these problems. You hope that you can just love your kids enough to give them eternal happiness, but sometimes, love is not enough. I hate watching him struggle. I hate that he has to work harder than anyone else to get his body to do what he wants it to do. I hate that people don't understand him. I hate that I don't have all the answers. I hate that I can't shelter him or make it all better. I know we have to address these problems. He is a kiddo that is so smart, so funny and so full of spirit. I don't want anything to get in the way of that.

Thursday, November 18, 2010

...is how many hunters will be in the woods of Wisconsin this Saturday morning. That's a whole lot of men (and some women, too) with guns!! All the men in my family will be out scouting for the perfect beer, I mean deer. Be safe out there, guys!!

Wednesday, November 17, 2010

After last Wednesday's conversation with 'Lil Miss "I'm a 20-year-old, uneducated, bitchy insurance call center rep with a chip on my shoulder" left me totally frustrated and dissatisfied yet again, I decided it was time to pull out the big guns. I sent off a quick email to our Senator's office, whose assitant, Cindy, has always been extremely helpful and supportive. She has provided assistance in the form of a "gentle nudge" to MA twice in the past and both times the cases in question were immediately resolved. Today I got a call from M's pedi's office that she has suddenly been approved for 5 doses of Synagis and will receive her first shot next Wednesday. So, not sure if it was Senator magic again, some other divine intervention, or the fact that everyone was finally sick and tired of hearing from me, but I'm thrilled that we can put this month-long fight to rest.

Yesterday, we also were delighted to receive new photos of K, who is now 3 weeks post-op and looking INCREDIBLE!! For some reason, I feel like this fight is coming close to resolution, as well. I sure hope I'm right about that!

I have had a difficult week and half. I've had a headache, sometimes mild, many times severe for about 10 days now. It's very similar to how I was feeling when I had pseudotumor last August. With our new (and much crappier) insurance, I hesitate to run off to the doctor. I'm praying it resolves soon.

Friday, November 12, 2010

M had back-to-back appointments yesterday - pretty big ones! She had a renal ultrasound which, unfortunately, showed that she's having significant urinary stasis. This means that her bladder is not emptying properly. As is common with kiddos like her who have little no muscle tone, things like bladder and bowel function are often affected. We've got her to a point where she poops once or twice a week (if you're not interested in this part, feel free to skip ahead) and it is nice and soft. However, that means that on the days when she's not pooping, there is likely extra pressure on her bladder and urethra. Potential complications of stasis are frequent infections and kidney damage, just to name two. First thing we have to do is get her pooping daily - easier said than done, but we're going to give it a try. She'll probably have a VCUG when she is hospitalized for her next throat surgery in December.

At her neuromuscular rehab appt, it was decided that it's time to cast her for bilateral AFOs. Her achilles' are extremely tight and her little feet are starting to change form (not in a good way). Since she is a long way off from crawling or walking, her AFOs are going to be solid and fixed, their use primarily to give a nice stretch to her legs/ankles/feet and hopefully prevent further tightening. We had a brief discussion about Botox, but we're a ways off from considering that as a potential treatment. Her overall tone, the Doc felt, was a little worse - when I call her my noodle, I'm really not kidding! Good news is her left arm and hand appear to be stable with the Mckie splint she has. Her head throwing, head/chest hitting, face scratching seem to be sensory. M LOVES to be in motion. She loves to swing and be thrown gently tossed in the air. She needs vestibular input and we're searching for ways to provide it for her. She can't be in her Jumperoo because she bangs her head and face. She's too heavy for her infant swing. She doesn't sit, roll or crawl. Her vision impairment prevents her from getting visual sensory input. We'll be trying out some equipment when we go to the Rehab clinic for casting and see if we can't find her something to satisfy her need for motion. We're adding one new medication to her regime to see if we can get her a little stronger and improve her endurance a bit. Overall, a very good, very informative appointment.

Lastly, it was EEG time - the most dreaded of all appointments. M cannot stand to have her head touched. She barely tolerates having her hair combed. Attaching all the EEG leads and then subsequently taking them all off is a big ordeal for her (and the poor tech that gets stuck with us). Luckily, she's so worn out after getting them on, she goes right to sleep for the actual test. While we don't have the "official" read on the tracing yet, the techs there are never shy about letting me take a look and comparing to previous tracings. This one looked better than any she's ever had. She had very little disorganization and the tracings were almost....get this....symmetrical! This is HUGE! I have to say that it correlates nicely with her clinically. She's had very few seizures since starting the Tri-Leptal last month. We haven't seen a spasm (knock wood) in several months. She's been more alert, happier, more interactive and sleeping better, too.

I also drew labs on her last week and all is looking perfect!

We're still fighting the insurance to get her Synagis for the season. It's an uphill battle, but little do they know who they're dealing with. Sometimes I get the feeling they try to ignore you long enough in hopes you'll go away. Not happening!!

I got word today that the anterior trunk support vest that was not ordered with her wheelchair is FINALLY in (after FIVE WEEKS). We also lost a couple of very important parts of the chair and those are on order. Next Thursday I'll make the trek to the medical supply place for a re-fitting, "installation" of the vest, and hopefully repair.

I guess this wasn't a very "quick" update after all. That's what's going on with our girl right now.

Wednesday, November 3, 2010

Finally....after two years of trying..."baby" K had her first cleft surgery by the German craniofacial team that travels to Bishkek. We are so incredibly grateful to all of the people involved in making this happen. I am absolutely blown away by the results. She is exactly one week post-op and the surgery looks to be a huge success. She was beautiful before, and she's beautiful now! There's lots of healing to take place so as long as there are no complications, the repair will continue to look better and better. I only wish she could be recovering at home with her family.

Tuesday, November 2, 2010

One year ago today, our amazing, little miracle baby officially became part of our family. Little did I know then how much she would change our lives. This last year has definitely been a roller coaster - a little scary at times and a whole lot of fun! We are celebrating tonight with a cake that big brother desperately wanted to make for his little sis and Thursday we'll all take the afternoon off, go out to lunch, take a very exciting trip to Department of Homeland Security for our one billionth set of USCIS fingerprints (okay, that MIGHT be a LITTLE dramatic), and then back to school for E's 4K Halloween Party that was cancelled last week due to a power outage.

About Me

I am a happy wife and lucky mom to four very special kids. If there's one thing I've learned over the past few years it's that life never goes as planned - and that's okay by me! feel free to email us: ksfenske@gmail.com

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For six long years we've held her tightly in our hearts. Leaving her behind in her orphanage was the hardest thing we ever had to do. We've fought like hell to be allowed to bring her home & promised her that we'd never give up.

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Some luck lies in not getting what you thought you wanted but getting what you have which once you have got it you may be smart enought to see it is what you would have wanted had you known..... ~Garrison Keillor